Ovarian Cancer Awareness Month: Crank up the volume

With ovarian cancer often called the ‘silent killer’, the charity Target Ovarian Cancer (TOC) is encouraging us to Start Making Noise in March. Kath Pinder from TOC gets the ball rolling.

Posted on 01/03/2016

We don’t often talk about our ovaries. They just aren’t something that comes up regularly in conversation.

We talk about ovarian cancer even less. Many of the women I speak to every day in my role supporting women with the disease had never heard of it before they received their diagnosis.

This March, for Ovarian Cancer Awareness Month, we’re asking people not just to talk about ovarian cancer, but to shout about it. With enough shouting, we can make some headway and save lives.

At Target Ovarian Cancer, we work to improve early diagnosis, to fund lifesaving research, and provide much-needed support to women with ovarian cancer.

Much of my day is spent on the phone, email or social media, talking to women who have just been told they have ovarian cancer, who have just been told their cancer is coming back, or who have just been told their cancer is terminal.

“When a woman is diagnosed at the earliest stage, her chance of surviving ovarian cancer for five years or more doubles from just 46 per cent to more than 90 per cent.”

I am enormously inspired by the women I work with. You would think that a diagnosis of ovarian cancer, substantial surgery and toxic drugs would give a woman permission to have plenty of duvet days, but many of these women are campaigning day in, day out, for changes that they will never see themselves. I’ve seen women in Parliament, in the midst of chemotherapy, determined to make a change for others in the future.

I remember talking to one woman, Jenny, who said: “What do you expect me to do, cry into my pillow?” She died last year, but not before she’d presented in Parliament, been interviewed by various media, taken part in a film and given numerous awareness talks.

Many women are understandably knocked back by their diagnoses, and unable to take on such huge challenges. And we’re obviously here to support them too. To provide women with ovarian cancer with the avenues to campaign for change, but also to simply support them, when they need it.

Currently, women with ovarian cancer face a severe lack of support. Recent research from Public Health England showed that a fifth of women with ovarian cancer are not receiving any information or advice on the physical or emotional impact of living with a cancer diagnosis. This is despite the fact that over half of women reported having difficulties with anxiety or depression and a similar number reported pain or discomfort.

A cancer diagnosis can leave women and their families feeling powerless. Good quality, timely advice and information can help them take charge of their treatment and put in place some of the practical and emotional support they need. Providing this sort of advice can make a huge difference to how a woman faces her cancer diagnosis.

Target Ovarian Cancer’s infographic on ovarian cancer (click to see full size).

Our information aims to allow women to take control and feel less isolated. Reading in our guides that Maria said: “When someone turns around and tells you you’ve got cancer, it kicks your legs out from under you, no matter how strong you are,” allows a woman to know that whatever she feels, she’s not alone.

Ruth, on the other hand, gives practical advice: “I think if you are the kind of person that gets up at six in the morning to do your cleaning and you don’t feel like it anymore, then don’t do it.” And reading about Margaret and her experiences of a stoma bag after surgery for ovarian cancer is immensely reassuring for someone who has loads of questions but doesn’t know who to ask.

Our website is populated with dozens of stories of women talking about their diagnosis, their treatment, how they feel – with both positive and less positive outcomes.

Just this week I received an email from a woman whose mother had just been diagnosed: “The hardest thing is just not knowing what will happen. Your website has really helped give me more hope for the future.”

I feel privileged to be able to play this part in helping women when they most need it. But I’d much rather be seeing the day when this support is no longer needed. When ovarian cancer doesn’t affect more than 7,000 newly diagnosed women a year. When women are diagnosed early and able to get the treatment they need to cure their disease.

Until then, and particularly this March, during Ovarian Cancer Awareness Month, we’re asking everyone to Start Making Noise and shout about the symptoms.

Far too many women are diagnosed too late, once the cancer has already spread, making treatment more difficult. But when a woman is diagnosed at the earliest stage, her chance of surviving ovarian cancer for five years or more doubles from just 46 per cent to more than 90 per cent.

Simply by making sure women know the symptoms of ovarian cancer, and with your support, we can get more women diagnosed sooner and save lives. Let’s Start Making Noise this Ovarian Cancer Awareness Month.

Kath Pinder is head of supportive services at Target Ovarian Cancer and leads on TOC’s support and information work, which includes developing high quality information on all stages of ovarian cancer, in accessible formats for all those affected, and delivering a series of face to face events across the UK which aim to reduce the isolation and anxiety felt by many women with ovarian cancer through empowerment and education.